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9.07.2012

friday faves - kick ass chicks

I shared dinner the other night with a new friend. We huddled up to the
bar of our local sushi joint and were pampered by the lovely young and
vivacious manager, wearing her slim peachy summer frock. We noshed on
sushi and tempura while drinking cold fizzy unfiltered sake from tiny
cobalt glasses. Some boisterous college students crowded around tables
behind us dunking over-sized straws into large hand painted bowls filled
with rum and fruit juice.

As the night wore on, and a green pile of empty edamame pods grew, we
talked of reunions, old friends and family, then the conversation turned
to our boys and eventually to the concept—the reality—of our grief and
hardship. I asked her how having a child with a rare syndrome who might
not live out his childhood years has changed her, knowing well my own
constant and honed awareness of Calvin’s mortality. The one underlying
thread that came through in her words, and was perhaps even invisible to
her, was her amazing strength. Maybe she was born with it. Perhaps she
acquired it in high school or college, but more likely much of it was
newfound. I think the girl (and I don’t use the word in the pejorative
sense that many men and women who I know use it) can kick some major
ass, especially when it comes to her boy.

She went on to tell me how, before her son was born, she was quieter,
maybe even timid. But she soon learned a few lessons that mothers and
fathers of chronically sick kids learn when they go to hospitals and
inevitably, somewhere along the way, receive poor, even negligent,
treatment. She learned to advocate. She learned to be assertive. I knew
exactly what she was saying. I’d been on the receiving side myself, or I
should say, that poor Calvin has.

I recounted for her the first time Calvin was admitted to the NICU for
status epilepticus, a dangerous, sometimes fatal, prolonged seizure or
series of seizures. He was little, only two and small for his age, and
an adult neurologist put him on his first anticonvulsant drug. Michael
and I requested the drug literature and while reading through it, as
Calvin wailed and writhed and screamed raving mad like we’d never heard
him before, we realized he had been given twice the appropriate dose for
his weight. We were beside ourselves. The dose was changed with no
apology or recognition of error.

My friend listened to me describe the painful, bloody emergency intubation that my babe had to endure without anesthesia, while he was breathing.
His respiration had temporarily stopped during a seizure, which is not
uncommon, but had resumed and yet the intubation was deemed urgent by a
hospital physician who had never met Calvin before and thus it was
carried out amidst his thrashing and terrified shrieks of pain. I told
her about the time it took two nurses and a doctor over thirty minutes
to successfully insert an I.V., during one of Calvin’s prolonged
seizures, in order to administer emergency medication to stop it. Why
they didn’t jab an intramuscular drug into his thigh (which then I
didn’t know was possible or I would have asked for it) to this day I do
not know. Upon first arriving at the emergency room I had apprised the
medical staff that Calvin was a “hard stick” so to please give us their
most talented IV specialist. My request, for whatever reason (lame)
was not heeded (and never has been in subsequent circumstances) and
Calvin suffered—greatly—a forty-five minute seizure, far longer than he
might have if the drug had been delivered in a timely manner.

So, my friend and I exchanged horror stories about our underdog kids who
can’t walk by themselves and can’t talk, whose health is significantly
compromised, whose lives seem to balance on a thread—from here to
tomorrow—perhaps equal to our own strength (luckily we and the boys are
resilient as spiders silk, the strongest fiber known to man.) These stories might have seemed completely inconceivable except for the fact that
we have lived them. As I sat next to her at the bar, looking into her
clear, bright eyes, her sassy drop earrings jangling to and fro as she bobbed her curly head, I realized that I was looking into a
dark mirror, one that looked back at me and said, yes, I know ... I
know. And as we left the restaurant, our bellies full and warm, my
adrenaline pumping, all I wanted to do was to go out there into the
world and kick some major ass.

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My son Calvin was born six weeks early with significant neurological problems of unknown origin. When he turned two he was diagnosed with epilepsy, which eclipsed all other adversity he'd encountered. No drug or dietary treatment has completely controlled his seizures. I write about the challenges we encounter, and the great perspective we gain as a result. I post something several times weekly in an effort to increase epilepsy awareness, dispel the myths, promote understanding and inspire empathy, all in hope of a cure.